I cannot believe that it has already been a year since this beautiful rare gem joined our family and 5 since I became a mom. We could not be more blessed to be their parents and Ava loves being Emma's big sister. Thank you Ava and Emma for choosing us to be your parents. You inspire us everyday to EMBRACE LIFE and be the best people that we can be. You have taught us so much and brought so much love and faith into our lives.
Boy does these girls know how to party!!! Ava's Birthday is March 3rd and Emma's Birthday is March 20th, she brings spring which makes so much sense because as Ava sings to her everyday she is our SUNSHINE. At her party we were so lucky to have my amazing cousin and her husband, Jeff Eastman, with Jeff Eastman Photography set up a photo booth that took pictures every 30 seconds. We had all sorts of props, needless to say we are so excited to get the pictures back. We also had a visit from the one and only Mascot Miracles Foundation!!!! The mascots, Princess Jasmine, and Aladdin were a HIT! I cannot thank this amazing group enough please please if you can donate to this foundation do because they help families like ours everyday. They even brought each of the girls a Build-a-Bear!
Girls with their Build-a-Bears and princess crowns - see more pics with mascots/princess-prince in the video below
Here is a little video of her party: so many more pics to come I will post them when I get them all :)
Here is a little video that I put together of Emma through out her first year of life, that was playing at her party. I love making videos of my girls every birthday to show them how much they have grown and how many accomplishments they have made. -note: it is about 25 min long so what til you have time to watch it :) you will have to click to be redirected to youtube to watch it...its safe to click I promise :)
I love when Neurology appointments go well. She was very happy with Emma's progress, or inchstones I should say and was thrilled about her seizure control. She did refer us to a doctor to help treat/look into her spasticity (high tone) we will schedule an appointment soon. She doesn't think it's horrible but worth getting it checked out to be proactive. We also had a Well Check with her pediatrician and he too was pleased with her overall growth, height and head growth. She is still on the small side but still thriving. Her head is growing but at a slow rate, she is in the <3% for her head.
*Weight: 17 pds 15 oz
*Heigh: 28 in
She got 3 immunizations today and we are praying that we can keep her fever down to prevent any seizures please pray with us for no seizures! She handled the shots like a CHAMP and loved her grape sucker mommy and daddy let her have after lol. The perks of being one years old moms lets you splurge every now and then, like frosting on your bday and suckers when you get shots haha. Emma also did a little showing off at her appointment sitting up unassisted for a few seconds with both hands flat....inchstones make my heart happy!
1 year well check and 5 year well check
Ava is use to mom taking millions of pics and Emma is like stop already LOL
Big sister also had her 5 year Well Check and she is rocking it. She passed vision with no problem and she is growing like a weed. As for her development, she keeps shocking me daily on what she knows how to do. We are very proud parents of both of our girls! Here is a proud parent moment that happened at Emma's Birthday Party.
Thanks for your continuous prayers, love and support.
*On Emma's facebook page I had asked her followers what info they would like to know and what questions that they had. This post is based on those questions and some just wanted a little more info on certain things like seizures and therapy. Hope this information is helpful.
Before I was a special needs parent I was a little nervous around special needs children/people and not because I was scared of them but because I was uneducated. I never knew how uneducated I was until Emma was diagnosed. We haven't experienced much staring or looks yet with Emma until recently when we got our GoTo Seat. Before now she's just been looked at as a typical infant. As we put her in her high chair at the resturant with her seat or in her seat in the shopping cart I started to notice that it was going to start happening and I wanted to be prepared for it. As a special needs parent I am happy to share Emma's story and I would rather you just ask instead of stare. We need to teach our children that special needs people are not scary but that they are very similar to us, no matter what they look like, how they move, or what devices they use to help them function through life. This is one thing I feel blessed about with Ava is she will grow up knowing that being different is ok and we love and accept people no matter what they look like or what abilities they have or don't have.
What Do You Say?
I am not speaking for every special need parent and I know that a lot of people don't like to share their childs story but not me I am very happy to share, awareness is key! Here is my suggestion on how to approach a child with special needs. Keep in mind not all people feel this way but for me it is how I feel. I understand staring is part of learning and exploring new things but asking questions can help get you more answers.
* if you are curious just ask :) approach and say something nice and positive about my child. Ask her name, say shes cute, ask her age etc. This gives me an opening to share more if I want to or I can keep quite if I choose to. If you have a child there let them ask questions too they are curious and we should let them be it will help them more than you know in their future.
Here is a podcast that I listen to about raising a child with special needs they are interviews with parents and other fantastic info that I have learned. If you listen to this episode mainly at the spot of 18 min and 30 seconds you will hear another special needs parent feelings on this topic (we are pretty similar). Side note: if you are a special needs parent or caregiver I suggest listening to this podcast BRINGING UP BETTY, every episode is benefical I have learned so much and I have felt normal in moments that I wasn't sure feeling a certain way was ok.
Emma's lissencephaly is caused by a partial deletion on Chromosome 17. This would classify her with what's called Miller Dieker Syndrome or ILS or Classic Lissencephaly Sequence. What this means is Emma has the most typical type of lissencephaly Lissencepahly is a rare condition 1 in 100,000. But I have actually learned over the last year that lissencephaly can actually be caused by other chromosome deletions as well, and possible infections early on in pregnancy but most are due to a genetic reason. I have read that there are about 20 different types of lissencephaly but they are still researching. I am not too familiar with those so I won't go in to much detail I just know it's not only chromosome 17. As far as research goes sadly I have yet to find any they just don't know enough to start researching :(. There is however one yes that's right ONE specialty Doctor located in Seattle and he can go in to more detail to help us better understand the severity of the liss that Emma has but we have decided that we are not going to take that route. There is no cure or treatments for her besides therapy and controlling seizures, which we already do. A doctor will not write Emma's story, she will write it herself. Here is a link to the info that we received at Primary Childrens Hospital moments after her diagnosis. It took way longer than expected for me to read it I didn't want to hurt. Sadly they didn't have much more info than this 3 page report.
Our hearts were broken the world was dark our lives flipped upside down. But now nearly a year later (March 25 was diagnosis day) I would have never guessed we would be where we are. Emma is our world and our tour guide in this new world that we live in, we couldn't have been blessed with a guide.
Seizure History
Emma started to have seizures at 4 days old our first night home from the hospital. I thought I was crazy mom but then I showed my husband and he agreed something wasn't right. We took her to our pediatrician who we showed a video to from our phone of one of the seizures we recorded. Because of course when you actually go to the dr for something that you went for it doesn't occur when you are there. He first looked at me and knew something was wrong he knows us well because of Ava. He watched 2 seconds of the video and said yes she's seizing. Then he said is Ava somewhere safe we replied yes and he said for a few days and we said yes and he said good head to primary Childrens hospital and don't stop anywhere!!!! He had hospital staff ready for us. That day she had between 25-30 seizures. The most heartbreaking thing ever (see video below). They started her on phenobarbital. After about one month her seizures where controlled to maybe one a week. She stayed on pheno for about 5 months with one slight increase due do seizure activity because of growth. At about 6 months infantile spams started. This was hard for Emma we started prednisolone steroid and increased the dose to the max that we could in the 3 weeks and sadly no improvement. We had to wean her carefully. Our next try was to increase pheno to our limit. Her body didn't handle this well and she slept almost all day. The levels were too high for her body. 5 weeks later still having 10 min clusters of spams. We researched some meds ourselves and decided to ask to try zonisamide and it helped control the spasms but now she stopped eating. She dropped from 25-30 oz of milk to 8-10 oz. Eating is something Emma is so good at and we didn't want a feeding tube as we couldn't just let her not eat so we talked with the dr and dosed her down to where she was eating again but the seizures were still happening. In Utah you have to have 3 failed seizure meds in order to received a hemp card to try CBD oil. Emma qualified to try this so after much research we decided to give it a try. Emma started the oil on Oct 20, 2015 once she was safely weaned off all her prescription seizure meds. She had one seizure on Oct 29 that lasted about one minute. She had 2 more seizures on Dec 20 due to having croup. She got RSV and double ear infections with fevers reaching 103 and I was shocked we didn't witness one seizure. We are so blessed to have the Charolettes Web in our lives. Along with seizure control I believe that Charolettes Web has also brought us Emma. She started to smile and laugh something we hadn't witnesses before. Therapy sessions started to last the whole time and without tears. She was a new person....she was Emma 💜.
Here are the two types of seizures that we have seen exibited by Emma. 4 days old (video we showed her Dr):
Infantile Spams:
Early Intervention/Therapy
Emma started with our local early intervention program at 4 months old. They did a bunch of intake evaluations and tons of paper work lol but Emma qualified. They started to work with her every other week for an hour for physical therapy we started small of course because she was only 4 months old. As she got older we increased the time to one hour every week. Our amazing PT let us try Aqua therapy with Emma and the first time not so great but the next 2 times was great. We have since also added occupational therapy and vision therapy. The vision therapy is not because she can't see but to help build her eye muscles and learn how to move her eyes correctly to follow objects find and them by sound Etc. Emma's PT and OT come together so they can work her at the same time and by having two people they can push her a little more. They come once a week for an hour, vision also comes once a week for an hour and if we get pool therapy we get that 30 min a week (it's a hit and miss if the pool is ok to get it wink wink). Currently, in therapy she is working on sitting, rolling over, swatting at toys, following or tracking items, holding two items at the same time different hands, and weight barring on hands and knees. I am sure I missed some things like head control which is as constant that we work on. Between therapy appointments Brandon, Ava and I work so hard to help Emma meet these goals and milestones or inchstones as we like to call them. We are also blessed that Grandma and Grandpa help work her too during the morning while mom is as work. We are so lucky to have them to help out and we can't thank them enough. *make sure you read the previous post of my favorite items that we have used to assist Emma in therapy*
*On Emma's facebook page I had asked her followers what info they would like to know and what questions did they have. This post was based on those questions, if you have any questions or comments that you would like answered or addressed please leave them in the comments or you can email us at Embracelifeemma@gmail.com. I am happy to answer any questions I love creating awareness. Thanks and remember to EMBRACE LIFE!
